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Copyright 1991, 2002, 2005
Synonyms of Gorham's Disease
- Disappearing Bone Disease
- Essential Osteolysis
- Gorham's Syndrome
- Gorham-Stout Syndrome
- Idiopathic Massive Osteolysis
- Massive Gorham Osteolysis
- Massive Osteolysis
- Morbus Gorham-Stout Disease
- Progressive Massive Osteolysis
- Vanishing Bone Disease
Disorder Subdivisions
General Discussion
Gorham's disease (GD) is an extremely rare bone disorder; fewer than 200 cases are reported in the medical literature. It is characterized by bone loss (osteolysis) often associated with swelling or abnormal blood vessel growth (angiomatous proliferation). Bone loss can occur in just one bone or spread to soft tissue and adjacent bones.
Although the disease may strike any of the bones of the body, it is more often recognized earlier when the bones at the top of the head (calvarium) and/or the mandibles are involved.
Because of its rarity, the disorder often goes unrecognized. As a result of that, coupled with a lack of agreement on how best to treat Gorham’s disease once it is recognized, treatment may often be delayed. The cause of Gorham’s disease is unknown.
Organizations related to Gorham's Disease
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Lymphangiomatosis & Gorham's Disease Alliance
19919 Villa Lante Place
Boca Raton FL 33434
Phone #: 561-441-9766
800 #: N/A
e-mail: info@lgdalliance.org
Home page: http://www.lgdalliance.org/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
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